Verana Health Announces the Qdata Parkinson’s Disease Module at 2023 AAN Annual Meeting
Verana Health, a digital health company elevating quality in real-world data (RWD), has announced it’s releasing in Q2 2023 Qdata® module for Parkinson’s Disease (PD). The Qdata Parkinson’s Disease data module offers extensive disease activity details and insights based on real-world data from an initial 15,000 de-identified patients derived from electronic health records (EHRs). This de-identified patient cohort will continue to expand as more data is ingested and curated into the new module. The module is powered by the American Academy of Neurology (AAN) Axon Registry®, one of the largest real-world clinical data registries for neurology in the world, and is being announced during the 2023 AAN Annual Meeting in Boston (April 22-27).
By accessing, curating, and analyzing de-identified EHR data from the Axon Registry, Qdata Parkinson’s Disease will provide unique and comprehensive information about the natural history of the disease, treatment patterns and outcomes, disease burden, healthcare resource utilization, safety events, and comparative effectiveness of treatments. This will help enable researchers and physicians to better meet the current needs of patients with PD and to develop and evaluate new treatments and protocols.
Nearly 1 million people in the U.S. and 10 million worldwide have PD. This brain disorder is the second most common neurodegenerative disease after Alzheimer’s. Characterized by tremors, slow movements and stiffness, early (or prodromal) symptoms of PD are subtle and include impaired smell and sleep disorders. But as PD progresses, patients may struggle with walking and talking, depression, cognitive decline, and exhaustion. Most PD patients first develop the disease between the ages of 60 and 70.
There currently are no definitive diagnostic blood or lab tests for diagnosing non-genetic cases of PD, which are known as idiopathic PD, nor is there a known cure. A diagnosis usually is made by a neurologist who reviews the patient’s medical history, conducts a neurological exam, and documents cardinal signs and symptoms of PD in their EHR notes. The four cardinal signs of idiopathic PD are rest tremor, bradykinesia (slowness of movement), rigidity, and loss of postural reflexes. Neurologists and researchers use the presence of these signs to differentiate PD from other neurodegenerative disorders such as Alzheimer’s disease.
Verana Health’s Qdata Parkinson’s Disease will give researchers access to high-quality de-identified data by including only patients in the Axon Registry who have at least one Parkinson’s ICD code and at least one of the following:
- A second Parkinson’s ICD Code at least six months after the first;
- At least two or more mentions of Parkinson’s cardinal signs in notes; and
- At least one mention of deep brain stimulation (an elective surgical procedure) surgery in notes.
In the past, much of the research was based on claims data that doesn’t include cardinal signs and symptoms for PD. The Qdata Parkinson’s Disease module definition was validated against clinical notes, which also does not exist in claims data.
Qdata Parkinson’s Disease will help researchers better understand the disease’s progression and stages. In research settings, PD severity is assessed using the Hoehn and Yahr scale and the UPDRS score, which is the gold standard used by neurologists for monitoring the response to medications used to decrease the signs and symptoms of PD. The UPDRS score is not included in many EHRs, however, the Qdata module will include key criteria for the UPDRS Part III score, such as severity of tremor, bradykinesia, and rigidity, as well as the presence of postural instability. The module will also help researchers better define groups of de-identified patients with motor complications from current medications used to control Parkinson’s disease motor symptoms.
“This new Qdata module will open up the opportunity to follow de-identified patients with idiopathic Parkinson’s Disease and understand the patient journey, including prodromal states,” said Heather Moss, M.D., Ph.D., associate professor at Stanford University and medical consultant to Verana Health. “It’s disheartening that a disease that affects so many people still has no cure, but by expanding our understanding of Parkinson’s Disease progression, we can learn how to better treat its debilitating symptoms and help improve the quality of life for patients.”
“Real-world de-identified evidence of the kind contained in the Axon Registry is critical for researchers to advance treatments for patients with Parkinson’s Disease and other neurological conditions,” said Mary Post, CEO of the American Academy of Neurology. “The insights drawn from our ongoing partnership with Verana Health will help our members, researchers and trial sponsors develop more effective treatments for patients.”
“Qdata Parkinson’s Disease will provide researchers with real-world insights that may fuel breakthroughs in our ability to treat and prevent or delay the physical disabilities caused by Parkinson’s Disease,” said Sujay Jadhav, CEO of Verana Health. “Qdata Parkinson’s Disease will be extremely valuable given our aging population, large unmet treatment needs and the robust pipeline for expensive new therapeutics to treat this disease.”
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